Happy Birthday, Brother

Today is Joe's birthday; he turns 27. He got hit by a car when he was 14, so this is the last year that he will have spent more of his life without a traumatic brain injury than with one.

Friends who I haven't seen in awhile will often ask me how my brother is doing. I always appreciate the question, though sometimes it's hard to know how to answer. There is no benchmark or control variable to measure against. Compared to what the neurologists said in 2005 when he was in a coma, when they warned that he might not wake up, when they said the might never recognize us or walk or talk again, he's doing great.

I'm so proud of him, and our family, for advocating for his healing and helping him live as normal of a life as possible. He works two part-time jobs which keep him active and responsible. He has gradually learned how to be more socially appropriate, and genuinely cares about people's feelings. 

But he still has frequent seizures, which makes him more vulnerable than any adult deserves. He stays close to home and will probably never drive a car. He walks a lot and takes the bus. He can often feel seizures coming 30 seconds to a few minutes in advance, and that lead time often gives him a chance to call for help or get in a safer position. 

Joe at a cousin's wedding, Sept 2017

He had a particularly upsetting seizure after buying new shoes at Big 5. He was alone, and planned to take the bus home. He woke up at the bus stop barefoot and didn't remember what had happened after leaving the store. He was carrying a shoe box with his old shoes, and a neighbor just happened to drive by and see Joe. The neighbor took him back to the store, and the store associate assured them that Joe had worn his new shoes out of the store. There is no explanation for or reason why Joe would have taken off his new shoes. The only thing we can think of is that they were stolen off his feet during or right after his seizure.

The worse thing that has happened in many years was this past fall when Joe was riding his bike alone along the Burke-Gilman trail in Kenmore, on the north end of Lake Washington. We assume he had a seizure while riding, because he was found on the side of the trail, face-down in a pile of soft soil and dead leaves. A passerby, who must have found him immediately and apparently not breathing, called the paramedics and performed CPR until the ambulance arrived. When they arrived, Joe had no heartbeat and they difibrillated his heart. It restarted, but they were concerned about his airways filled with soil and intubated and sedated him.  

In the hospital they ran all sorts of tests to see if his brain or other organs had been damaged due to the lack of oxygen from the time his heart was stopped. Miraculously, he seemed completely unscathed. He had to stay overnight as they needed to make sure he could breathe on his own. It also took many attempts to bring him out from sedation and extubate, as every time he'd start to regain some consciousness, he'd try to pull the tube out himself. Finally, he was awake and breathing on his own. It was only minutes later, in a scratchy voice, that he started hitting on the nurse. We knew that we was going to be just fine.

Caring for someone with a medical condition is a good reminder of a general life lesson: constantly assess how things are working and adjust as needed. Needless to say, Joe is no longer allowed to ride a bike alone. My parents don't want to discourage the independence, physical activity, and sheer enjoyment of him riding a bike, so now they organize a mentor to always ride with him.

Joe is a kind and humorous young man who makes the best of his situation. He loves any funny greeting cards, stickers, and t-shirts. He likes putting barbecue sauce on all of his food. He writes himself little handwritten notes everywhere and sets himself reminders on his phone. He likes hanging out with his nieces and nephews, even when he has to ask, "Whose kid is that again?" His brain may have been injured, but his heart is big and strong.